On that time we almost got a gastrostomy

It had taken months and months of planning – Kai was going to have an MRI and a gastrostomy under one general anaesthetic. We need the MRI to set a baseline for any treatments we have going forward. We need the gastro to improve Kai’s quality of life and reduce the risk of drowning him every time we feed him. But getting the radiology team and the paediatric surgery team on the same page to do both procedures under the same anesthetic has been a massive wrangle. In the end it was two wonderful anaesthetists who we met in our time in intensive care who came to our rescue.

They agreed – because of the dreaded NKH and how kids with NKH respond to anaesthetic and ventilators we want to reduce the risks. So doing both procedures under a single anaesthetic was a good idea (woohoo!). They got the surgeons to agree it would be best, for Mikaere, to go straight to a button so he wouldn’t need a second anaesthetic down the line. They found a spot in the schedule of one of two surgeons who were willing to skip the PEG and go straight to a button. They convinced the radiology team to let us use the adult MRI machine, because it was directly underneath the paediatric OR’s, and they wouldn’t need to transport Mikaere across the hospital unconscious (something that is quite frowned upon). They convinced both teams to be free on the same morning, and to bump Mikaere’s procedure to first thing to reduce the waiting time and the time Mikaere would be under.

The anaesthetists suggested a loophole to fasting – which we trialled beforehand. Just to see how Mikaere would react to a stomach full of dioralyte with his caustic medications instead of food (because we know he doesn’t tolerate them on an empty stomach, and if he doesn’t have them we run the risk of seizure comas, which is the opposite of what we want to happen when he’s under an anaesthetic). We went into hospital a day before the surgery was scheduled to make sure the fasting went without a hitch. And if it didn’t they had the back up plan of IV meds, ordered in especially for Mikaere at great cost.

It took several months of planning, cajoling and begging to line up all the dots, and we finally finally finally got the go ahead.

And so, we were in hospital. Waiting for our gastrostomy.

Except (there was always going to be an except, right?) – it’s the middle of winter, and kids all across the country are having a tough time breathing. There was not a single intensive care bed free for after the surgery. Because Mikaere is likely to have difficulty coming off the ventilator, he needed a PICU bed. And with no PICU bed, there could be no surgery. And there was not a PICU bed available. (Well… that’s a bit of a lie. There was a PICU bed, but it was needed for a child with a malignant brain tumour. I think it’s absolutely right that child got the bed rather us, with our elective surgery).

To hammer home how slammed intensive care is at the moment, we were told they just sent a child down to South Hampton (an hour and a half away…) to the last intensive care bed they had. The next closest intensive care bed available for kids was Nottingham. NOTTINGHAM. It is unbelievable how slammed the paediatric intensive care is right now (and how horrifically underfunded the NHS is that no centre can afford to open up a unit with more beds).

So. No gastrostomy. Our anaesthetist was so frustrated about the lack of intensive care bed spaces. It’s a real problem, hey. I didn’t even know. For me… I was a bit sad and quite a lot relieved. Sam and I had to have one of *those* conversations before the procedure. We sat in the dark by Mikaere’s hospital bedside and had one of those Quality of Life discussions. There is the real possibility that Mikaere won’t make it off the vent after going under an anaesthetic. One of the decisions we have to make was how long do we allow Mikaere to stay on a ventilator without waking up before we try extubate. It’s a very scary decision to have to make, and sitting in the dark I really didn’t want to make it. I still don’t want to make it, not really. Trying to make a decision of letting go is tough.

Call me silly, but I’m grateful we don’t have to make that decision right this minute. That we’ve got a small reprieve away from risks and quality and the medical everything. We’ll tackle it all when it comes.

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Team Mikaere is for those following the journey of Sam, Elly and Mikaere - a baby boy with Nonketotic Hyperglycinemia. We've partnered with Joseph's Goal to raise funds for the NKH Research done by Dr Nick Greene as part of UCL. He's currently the world leader in NKH research.

We're so hopeful that better treatment options will be found for kids with NKH. It's so rare, less than 500 kids worldwide are diagnosed with it. Every pound we raise has a direct and profound effect on the research that can be done.

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Help us raise money for NKH Research. Help us help give Kai future. It sounds so cheesy, but holds a sobering amount of truth for us. NKH is terminal, without treatment Kai may not have a future.